Angela Kennedy, mother of a CFS patient, and founder of The One Click Group, responded at length to the article on disrespectful medical treatment. I'll share a few paragraphs of her commentary:
I do feel that even these strategies may not
prevent the terrible problems people with this group of illnesses
experience with their doctors, because of social structures and
distal power relations around medical arrangements in Western
societies, beyond the patient's control.
More importantly, I think articles like this do have the potential
unfortunate effect of putting the onus on the patient to change
behaviour- so that when the patient-doctor encounter is STILL
problematic, the implication is that the patient has not done things
I say this from experience (last week actually! and it's not the
first time). And I'm not even an ME/CFS/FMS sufferer. <major snip>
I'm not saying don't bother employing certain strategies- I'm just
saying one may still come a cropper, and it is unlikely to be within
your control. If this happens, while learning from the experience,
one should NEVER blame oneself, as this is counter-productive, and
likely to be an inaccurate judgement of the situation.
I frequently see on these boards similar experiences, where
doctors or others are using behaviour designed to intimidate or
manipulate patients into not asserting their needs.
Research is being done on the power relations within medical
settings, how these are abused by doctors and others etc. I am not
trying to be anti-doctor, but a lot of abuse of patients is
institutionalised, and doctors should be accountable for their
behaviour, which in actuality rarely occurs. This is a difficult
area, because of the status and privilege acquired by one group (the
medics) and the lack of same of another (patients- especially with
difficult to diagnose chronic illness).
Like Angela, I've heard plenty of stories of dismissive doctors from CFS patients and have some of my own.
Although I've been told by some doctors that I give a darn good medical history, I was told by another doctor "nothing you said made sense". The information I was giving him didn't fit with what he wanted to hear, therefore, he had to "put the onus on the patient" -- the problem wasn't that he'd made a wrong diagnosis, the problem was with me not saying the right things to fit with the diagnosis he wanted to make. As Dr. Groopman's book describes, he ignored any information that contradicted his initial diagnosis. And put the blame on me when the wrong pills that he prescribed for the wrong diagnosis didn't cure me, which was, actually, proof that the diagnosis was wrong.
Angela makes a good point, that blaming yourself doesn't fix the problem, which is actually between the doctor's ears.
Since doctors don't seem inclined to make their colleagues accountable, patients must. If a doctor treats you disrespectfully, leave his practice and make sure he knows why you are leaving. Then make sure other people know why, too. Track down websites like RateMD.com and go public with your complaints.
The state medical board took the position that since my doctors hadn't killed me, hadn't amputated the wrong limb, "no harm, no foul". (Never mind that I've been told I'll never work full-time again as a result of the malpractice.) As a result, the medical board's records reflect "no complaints", so there is nothing there to warn anyone away from a doctor that a friend and I both had the same attitude problem with. But websites like RateMD aren't run by doctors, so they're not going to cover up the truth that some doctors should be avoided.
If you're willing to take the chance, sue the doctors. If nothing else, it'll get your name into the public record as someone who had problems with that doctor as a warning to other patients. The next time my former doctor is sued, I expect to be contacted to testify that falsifying medical records is his "pattern and practice", which will make the penalties that much harsher because he's done it before, been sued over it before, and didn't take corrective action.